Personal Stories : Euthanasia

Personal Stories : Euthanasia

Read testimonies and stories of people who others might have advocated that they should die, but they lived.

SIMON FITZMAURICE

In a powerful op-ed in the Irish Times on 12th April 2011, an Irish man with degenerative motor neurone disease (MND) has revealed how he was heavily pressured by the medical community to refuse the ventilator that is keeping him alive.

After having been admitted to intensive care for pneumonia, a common complication for paralyzed patients, Simon Fitzmaurice began receiving assisted breathing and a feeding tube. Shortly after being admitted, Fitzmaurice said, a doctor came in and told him it was rare and expensive for patients to have a ventilator at home.

According to Fitzmaurice the doctor told him, with his wife and mother present, "That it is time for me to make the hard choice. He tells me that there have only been two cases of invasive home ventilation, but in both cases the people were extremely wealthy."

"He looks at me. 'This is it now for you. It is time for you to make the hard choice, Simon.' My mother and my wife are now holding each other, sobbing."

But Fitzmaurice's instinctive reaction was for life: "While he is looking at me, my life force, my soul, the part of me that feels like every part, is unequivocal. I want to live. It infuses my whole body to such an extent that I feel no fear in the face of this man."

Two days after this encounter, he wrote, he and his family were informed that the home ventilator he needed was covered by Ireland's national health insurer, the Health Services Executive (HSE), and that the home care package needed to run the machine could be covered by the HSE and his family.

Fitzmaurice recounts that was later asked by a neurologist why he wanted to live, even though he had a degenerative disease that would eventually kill him. His answer: "Love for my wife. Love for my children. My friends, my family. Love for life in general. My love is undimmed, unbowed, unbroken. I want to live. Is that wrong?"

"Motor neurone disease is a killer. But so is life," continued Fitzmaurice. "Everybody dies. But just because you die, just because you will die at some point in the future, does that mean you should kill yourself now? For me, they were asking me to take my own life. Or to endorse euthanasia. I refused."

Experts say that Fitzmaurice's experience is not uncommon and that incidents like these are becoming a trend in medical practice – a trend that has become nearly universal in developed countries, especially those with nationalized, government funded health care.

"Sadly, his story is all too common," said Alex Schadenberg, head of Canada's Euthanasia Prevention Coalition.

Schadenberg said that philosophical trends away from traditional medical ethics, combined with massive tax-funded health care systems, have given rise to a new utilitarian-based ethical paradigm in treatment decision making.

Under this paradigm, called bioethics, Schadenberg said, "value judgments and negative attitudes toward people with degenerative conditions have led to imposing death on people who are vulnerable."

Hospital bioethics committees now routinely decide to withdraw treatment that could save lives, based on the principle of "patient autonomy" that holds it is in the patient's "best interests" to be "allowed to die," often by the withholding of food and water.

These decisions are increasingly being taken without the consent, and sometimes actively against the will, of the patient and his family. In some countries such as Belgium and the Netherlands, the new ethical system has led to legalized euthanasia and widespread abuse of the legal "safeguards" surrounding it.

Recent studies out of Belgium have shown that 32 percent of all legal euthanasia deaths are committed without request or consent by patients or families and only 47.2 percent of all euthanasia deaths are reported. In the Netherlands, the number is 550 deaths without request or consent each year and at least 20 per cent of all euthanasia deaths unreported.

Schadenberg said, "Everyone needs to be aware, society is already imposing death on vulnerable people and if euthanasia or assisted suicide becomes legal then it will simply be done in a quicker and quiet manner."

As for Fitzmaurice, he writes: "I do not speak for all people with motor neurone disease. I only speak for myself. Perhaps others would question whether or not to ventilate. But I believe in being given the choice, not encouraged to follow the status quo."

"I am not a tragedy," he said. "I neither want nor need pity. I am full of hope. The word hope and MND do not go together in this country. Hope is not about looking for a cure to a disease. Hope is a way of living. We often think we are entitled to a long and fruitful Coca-Cola life. But life is a privilege, not a right. I feel privileged to be alive. That's hope."

HANNAH JONES

A schoolgirl who went to court to claim her right to die only to have a change of heart has celebrated her 16th birthday and gone to her secondary school prom. Hannah Jones was just 13 when, left drained by debilitating surgery to cure a fatal heart condition worsened by a lengthy cancer battle, she denied a transplant.

Her decision stunned the world when she calmly stated she would rather die than undergo more hospital trauma and simply wanted to live her last days in peace. But Hannah's condition deteriorated and aged 14, having changed her mind, she underwent a transplant at Great Ormond Street Hospital.

She has celebrated her 16th birthday, done her GCSEs and enjoyed her school prom as a happy and healthy teenager looking forward to a future. Hannah, who lives in Ross-On-Wye, Herefordshire, said: 'I never thought I'd celebrate my 16th, do my GCSEs or be picking a dress for my high school prom.

'Although people thought I was too young to decide, I'd been through so much I felt I had the right. 'But everyone's entitled to change their mind and now I'm so glad I did.'

The teenager was celebrating her 14th birthday in April 2009 when her kidneys failed - with her deterioration acting as a catalyst for change. She said: 'I was obviously ill, but just thought I'd overdone it on my birthday.

'Actually, it turned out it was my kidneys failing and that's when the reality of the situation hit home. 'I love my friends and family so much and I wanted to reach adulthood, have a family, and have a career. 'I wasn't so sure anymore that I was ready to leave all that behind.

JAMIE / KATHY SINNOTT

On 30 November 2011, Kathy Sinnott, the Irish disability rights campaigner, and former member of the European Parliament (MEP) took part in a debate at University College Cork (UCC), Ireland, on assisted suicide organised by the UCC Law Society.

Mrs Sinnott began her speech (full text) by challenging the students to confront the fundamental questions of what it means to be a human person and what is the true nature of death:

"I would suggest to you that before approaching the question of natural death or euthanasia it is important to find out the truth about ourselves as the human person.

In doing so you will go a long way to answering another question important to this discussion: what is death?"

Mrs Sinnott spoke powerfully on a number of issues, including the attempts of hospital staff in Dublin to deprive her son Jamie of a feeding programme, based on their assessment of his quality of life:

"My first [experience of euthanasia and it's advocates] was a personal encounter which concerned my son Jamie, who is profoundly disabled. Following a severe reaction to a flu jab, his health seriously deteriorated. By the time he, a young man taller than I, had been reduced to 65lbs, he was spending a lot of time in hospital in Dublin.

However he was not being treated. I knew that he needed to be fully scoped and put on a feeding program; both were standard procedures that would have been performed on someone without a disability long before they got to this stage.

Through persistence, I got half the test done and based on this the consultant told me and repeated three times that if we did not get Jamie on a feeding program that he would die. I thanked him and said that we would do whatever it took to make a success of the feeding program. I was delighted that at long last, Jamie could start to get well.

But a half hour later, the consultant, two younger doctors and a nurse, came to the ward where I was waiting for Jamie to come back from the test. They sat down around me with an atmosphere of concern and told me that they had been talking and that they had decided not to put Jamie on a feeding program. They said his quality of life was poor.

I got Jamie out of there as fast as I could and brought him back to Cork, where he was fully tested and put on a program of elemental feeding. Today Jamie weighs 8 stone, he no longer needs a wheelchair instead he walks the country roads every day. He is not longer miserable he takes an active part in his life and sometimes even smiles.

Thank you Cork University Hospital Prof Quigley and team. And an Irish Constitution and High Court that recognized his worth and therefore his rights."

MICHAEL IN DOWNPATRICK

Legalising assisted dying is "selfish" and would pressure ill people to consider taking their own lives, a motor neurone disease (MND) sufferer claims.

Michael, who called BBC Radio 5 live's Breakfast from Downpatrick in Northern Ireland, said he would not end his own life if his illness worsened, but was constantly being asked by people if he would consider it. In a heart-breaking interview he said he felt pressurised to 'die' by others.

ANDREW LLYOD WEBBER

Andrew Lloyd Weber might not still be here if assisted suicide had been legal. He wanted to die and almost was set to go to Switzerland. Now, he’s glad he didn’t. From the Telegraph story:

Lord Lloyd-Webber, the West End impresario, was so convinced he wanted to die last year that he took steps to join Dignitas, the Swiss assisted suicide clinic, he has disclosed. The composer said he now believes that taking such a step would have been “stupid and ridiculous” but that it was all he could think of amid a bout of deep depression triggered by the pain from a series of operations.

He is among members of the Lords likely to oppose the bill tabled by Lord Falconer, the former Lord Chancellor, to legalise “assisted dying”, which will have its first parliamentary airing today. It came as Dominic Grieve, who until this week’s reshuffle was the Government’s chief law officer, said the proposals could open the door to a form of “legalised execution”. “It is not something that a civilised society should do,” he told The Daily Telegraph.

MARTIN PISTORIUS

A Young man who was called a 'vegetable' wakes up. Martin Pistorius, who fell into a mysterious coma as a young boy. He had only one thing left as his mind began to function again — his own thoughts. Here's a glimpse into his story.Read this amazing story and learn how he could hear and see everything while he was 'locked in'.

VALENTIA MAUREIRA

Valentina Maureira, who lives with Cystic Fibrosis, created a Youtube video in February 2015 asking the Chilean President, Michelle Bachelet, to allow her to die by euthanasia. Valentina got the idea from the Brittany Maynard assisted suicide campaign.

On February 28 President Bachelet met with Valentina. Presidential spokesman Alvaro Elizalde stated that ‘it’s impossible not to be overcome by emotion with the girl’s request, it’s impossible to grant her wish,’ because it’s not allowed under Chilean law.

JENNY BONE

CARINA MELCHOIR

A teenage girl in a coma after a catastrophic car crash came round just as doctors were about to declare her brain dead.

Carina Melchior had had life support withdrawn on the advice of medics and was being prepared for organ donation. But to the astonishment of staff at the Aarhus Hospital, in Denmark, the 19-year-old suddenly opened her eyes and started moving her legs.

HANNA LOTRITZ: DOCTORS THOUGHT I WAS BRAIN DEAD

A Reno, Nevada student is celebrating her 21st birthday this January – five months after doctors thought she was brain dead from alcohol poisoning.

Hanna Lottritz, a journalism student at the University of Nevada, Reno, shared her story at The Huffington Post to encourage young adults to drink responsibly, but her story also points to the potentially life-threatening dangers of a “brain death” misdiagnosis